Whether they are younger or older, siblings can add complexity to raising a child with a transplant. We only have N at the moment, but this subject is one that I worry about for when my husband and I eventually do have another child. How will we explain to them that N is different but the same? How do we not make them feel left out when N gets special attention with his medical complications and clinic visits? How do we make them feel just as loved and special? How do you answer their questions about everything involved with the transplant?
Amanda has been a huge resource for me on this subject.
Davis was 5 months old when he received his transplant. He is now 20 months old. His older brother, Hudson, is 3 ½ years old. We have told Hudson that Davis was sick and that he needed a new heart. I know as both boys get older, more questions will arise. We plan to handle them as they come.
We struggle with letting Davis be a “normal” baby, especially with his immune suppression being so unstable. We don’t ever want our fears to hold him back, and we want him to truly enjoy the life he has. On the other hand, we also don’t want Hudson to feel like he never gets to do anything because his brother is sick. It’s a daily struggle. We pray for stability with Davis’ med levels so we can do more normal family things.
I never want Hudson to feel like his brother gets more attention than he does. We try to do special things with just Hudson so that he feels just as special as his brother. There have been a few times when we haven’t been able to do things because Davis has been sick or his immune system too depressed. Hudson being three is also a good thing. When all of this happened he was two, so it’s really “normal” for him, too.
We try to do as many “normal” family things as we can. Of course, it takes a little extra preparation, and we always have to be aware of germs and do our best to protect both of them from getting sick. We have decided that we will not live in fear, but we will embrace the life God has given us here on Earth. None of us are promised tomorrow, so we live for today.
Tucker and I usually take turns with the boys when Davis is sick in the hospital. I’ll spend one night with Davis and the next night with Hudson. That way one of us is always with one of the boys. This is where we also depend a lot on our family and the nanny to get Hudson to school and other activities so his routine stays as normal as possible despite his brother being sick.
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant
You have to create your own sense of normal as a family. John Donne said that “No man is an island entire of itself;” we are each part of something larger than ourselves. The same notion holds true for a family unit. Every family must define its own “normal,” and each family member must be able to reconcile it with their own image of normal. Talk with your kids about how they feel, and do so often. Because self-discovery and the notion of one’s place in the world are ever-evolving phenomena. Don’t assume that the status quo is what is best. Your “normal” will evolve along with the growth and development of your transplant child and any siblings they have. Their relationships with you and with other family members will be shaped by what you define as your “normal.”
They [parents] always treated us the same. They [siblings] always knew what my needs were, and were/are always supportive.
Spend lots of time together.
-Laura Hofheins, 27 years post heart transplant